Welcome to the forum. Sorry you need to be here, though.
The diagnosis time period is crazy-making. No doubt about it. I think it's actually a tortuous time, all the waiting. I actually had a physiologic flight-or-flight reaction most of the time, with racing heart and sweaty palms and the whole bit. Awful. Truly awful.
I encourage you to go straight to the myeloma specialist near you right away, rather than waiting around. Myeloma is complicated and rare, and the treatments really seem to make a difference. So you want someone who is really up on the most current stuff.
I also encourage you to pre-treat with pain meds, and/or anxiolytics (like Ativan [lorazepam) for your bone marrow biopsy. If you have any of those. If you haven't already had it. Get a ride to and from.
Hang in there.
You are not alone.
Tracy
Forums
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: High IgG & kappa-lambda ratio, awaiting marrow results
Hi Tracy (and Toni, Multibilly)
Thank you for the posts. I was traveling for a few weeks but finally went today for the plasma bone marrow aspiration. Holy crap that was unpleasant. Today has been an emotional roller coaster to say the least.
Most of all, thank you for the last comment Tracy - get a ride to and from. I was going to go it alone, but when I read that, I changed my mind and brought the person closest to me. She was there the whole time and held my hand during the procedure. I felt faint, cold, and freaked out the whole time and the pain was not quite like anything I had experienced before, despite the numbing ahead of time.
Next week I go for an MRI and to check the results of the tests. New blood was drawn today as well, and immediate results are largely unchanged, although protein and immunigloblin counts are pending.
Despite not having any notable renal failure, calcium, or lesions, the doctor seems convinced that based on my age of 46 with the high kappa and high IgG, that there is some type of myeloma happening (vs MGUS). He tells me that it is more likely than MGUS because MGUS is more commonly found in older people. I hope he is wrong, as MGUS is sounding like a preferred alternative right now.
Although I am not happy about the initial prognosis, I am hopeful that, if it is in fact smoldering multiple myeloma or worse, that I am catching it early enough to live a healthy, full life, and that there are treatments for someone my age ... or at least that's what I have to tell myself.
Thanks for listening. I will be in touch.
Thank you for the posts. I was traveling for a few weeks but finally went today for the plasma bone marrow aspiration. Holy crap that was unpleasant. Today has been an emotional roller coaster to say the least.
Most of all, thank you for the last comment Tracy - get a ride to and from. I was going to go it alone, but when I read that, I changed my mind and brought the person closest to me. She was there the whole time and held my hand during the procedure. I felt faint, cold, and freaked out the whole time and the pain was not quite like anything I had experienced before, despite the numbing ahead of time.
Next week I go for an MRI and to check the results of the tests. New blood was drawn today as well, and immediate results are largely unchanged, although protein and immunigloblin counts are pending.
Despite not having any notable renal failure, calcium, or lesions, the doctor seems convinced that based on my age of 46 with the high kappa and high IgG, that there is some type of myeloma happening (vs MGUS). He tells me that it is more likely than MGUS because MGUS is more commonly found in older people. I hope he is wrong, as MGUS is sounding like a preferred alternative right now.
Although I am not happy about the initial prognosis, I am hopeful that, if it is in fact smoldering multiple myeloma or worse, that I am catching it early enough to live a healthy, full life, and that there are treatments for someone my age ... or at least that's what I have to tell myself.
Thanks for listening. I will be in touch.
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mid40sIgGKappa - Name: mid40sigGKappa
- Who do you know with myeloma?: being diagnosed
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 45
Re: High IgG & kappa-lambda ratio, awaiting marrow results
Hello there ... Glad to see you are getting more testing done. And, whew! glad you had someone go with you for the bone marrow biopsy (BMB). You can have conscious sedation for the procedure, in case you ever have to have one again.
I'm curious as to why your doctor is so convinced you actually have multiple myeloma. There are plenty of people who have MGUS who are younger than 50 years old. It's just that the percentages go up after age 50. I was 51 when I was diagnosed. I just met someone who is 30 and clearly MGUS. It happens. I just read some statistics recently that the incidence of MGUS before age 50 (maybe it was from age 40-50?) was 1% and then it increases until something like 10% of 90 year olds have it. Wish I had pinned that document.
So you will probably have your results in two weeks? When is your next appointment?
And Tracy is so right! You are not alone! We are not alone
I cannot even imagine going through something like this without all the knowledge and wisdom and emotional support.
I'm curious as to why your doctor is so convinced you actually have multiple myeloma. There are plenty of people who have MGUS who are younger than 50 years old. It's just that the percentages go up after age 50. I was 51 when I was diagnosed. I just met someone who is 30 and clearly MGUS. It happens. I just read some statistics recently that the incidence of MGUS before age 50 (maybe it was from age 40-50?) was 1% and then it increases until something like 10% of 90 year olds have it. Wish I had pinned that document.
So you will probably have your results in two weeks? When is your next appointment?
And Tracy is so right! You are not alone! We are not alone
I cannot even imagine going through something like this without all the knowledge and wisdom and emotional support.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: High IgG & kappa-lambda ratio, awaiting marrow results
Hi Toni and Mid40,
I celebrate my 60th birthday in June this year, and my hematologist has very much the same view as Mid40sIgGKappa's. She is convinced that my IgG lambda (15 g/L = 1.5 g/dL) and lambda free light chains (58 mg/L) are not benign because I am 'still young' and she expects it to progress.
I'm supposed to see her every 3 months, but I find the appointments so depressing that I now monitor my M-spike and free light chains under supervision of an integrative doctor. She has changed my statin to fenofibrate and the M-spike came down to 10 g/L. I'm embarrassed to admit that I was deeply disappointed when the M-spike didn't decrease further after another 2 months of fenofibrate, and had to be reminded that stable is good. I will post all the results under the fenofibrate thread after my next set of tests in June.
I suppose I'm in the market for a new hematologist - such a pity we have no myeloma specialists in my country.
All the best for you both.
I celebrate my 60th birthday in June this year, and my hematologist has very much the same view as Mid40sIgGKappa's. She is convinced that my IgG lambda (15 g/L = 1.5 g/dL) and lambda free light chains (58 mg/L) are not benign because I am 'still young' and she expects it to progress.
I'm supposed to see her every 3 months, but I find the appointments so depressing that I now monitor my M-spike and free light chains under supervision of an integrative doctor. She has changed my statin to fenofibrate and the M-spike came down to 10 g/L. I'm embarrassed to admit that I was deeply disappointed when the M-spike didn't decrease further after another 2 months of fenofibrate, and had to be reminded that stable is good. I will post all the results under the fenofibrate thread after my next set of tests in June.
I suppose I'm in the market for a new hematologist - such a pity we have no myeloma specialists in my country.
All the best for you both.
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Spanish Mary - Name: Spanish Mary
- Who do you know with myeloma?: Self, MGUS
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 59
Re: High IgG & kappa-lambda ratio, awaiting marrow results
Hi Gang,
Well, I've received my results from the bone marrow aspiration (BMA), and they are 20%. The initial x-ray showed an issue with a compression fracture, but my MRI determined that it was from an earlier accident and not associated. It is most likely from a recent injury jumping off a wall at an obstacle course (too old for that apparently). No other bone lesions, etc.
Based on all that, the 2.2 g/dL protein and absence of CRAB symptoms, my doc has given an initial diagnosis as smoldering. Not quite the news I was after, but somewhat relieved that I had no damage to my body caused by the cloning plasma cells and protein.
In June I meet with the myeloma specialists at Seattle Cancer Care Alliance that I was referred to, and they will evaluate my situation further. It doesn't sound like they will recommend any treatment yet, although SCCA is known to push the boundaries when it comes to early treatment and trials, even with smoldering. If this comes up, I will certainly post it and would be thrilled to get any input.
So, it remains to be seen if or how this is progressing, which I'm sure will be a source of anxiety from here on out. Only regular monitoring / trending will determine if it is progressing or not. Uhg! I feel fortunate, I guess, to have found out the situation, versus neglecting going to the doctor for another 5 years for a physical!
Thanks for listening. Still processing the information and what it means.
Well, I've received my results from the bone marrow aspiration (BMA), and they are 20%. The initial x-ray showed an issue with a compression fracture, but my MRI determined that it was from an earlier accident and not associated. It is most likely from a recent injury jumping off a wall at an obstacle course (too old for that apparently). No other bone lesions, etc.
Based on all that, the 2.2 g/dL protein and absence of CRAB symptoms, my doc has given an initial diagnosis as smoldering. Not quite the news I was after, but somewhat relieved that I had no damage to my body caused by the cloning plasma cells and protein.
In June I meet with the myeloma specialists at Seattle Cancer Care Alliance that I was referred to, and they will evaluate my situation further. It doesn't sound like they will recommend any treatment yet, although SCCA is known to push the boundaries when it comes to early treatment and trials, even with smoldering. If this comes up, I will certainly post it and would be thrilled to get any input.
So, it remains to be seen if or how this is progressing, which I'm sure will be a source of anxiety from here on out. Only regular monitoring / trending will determine if it is progressing or not. Uhg! I feel fortunate, I guess, to have found out the situation, versus neglecting going to the doctor for another 5 years for a physical!
Thanks for listening. Still processing the information and what it means.
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mid40sIgGKappa - Name: mid40sigGKappa
- Who do you know with myeloma?: being diagnosed
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 45
Re: High IgG & kappa-lambda ratio, awaiting marrow results
Hi mid40sIgGKappa,
Thanks for the update. I'm sorry the diagnosis came back as smoldering myeloma instead of MGUS. Just keep in mind, however, that there are people with smoldering myeloma who never progress to having symptomatic multiple myeloma. I think Multibilly, for example, has been smoldering for several years now, and his lab results seem to be quite stable, based on what he has reported in the fenofibrate thread he mentioned earlier.
SCCA has a lot of experience with multiple myeloma, so you will be in good hands there. They probably will have several trials that you may be able to participate in, including trials testing whether or not it is a good idea to actively treat smoldering multiple myeloma. Fortunately, you probably won't have to make any decisions right away on that subject.
One thing you should consider doing now is organizing your medical records so that you can better keep track of your lab and imaging results. Again, check out Multibilly's postings in the fenofibrate thread to see the lab results he tracks. Personally, I think it's a good idea to track your immunoglobulin levels (IgG, IgA, and IgM), M-spike, free light chain results, hemoglobin, creatinine, and calcium. If you're handy with Excel, enter these results into a spreadsheet and plot the results so you can pick up on trends (let's hope all the lines stay flat!).
When you have appointments with your specialist, try to write down in advance questions and topics you want to discuss, and consider having someone go with you to the appointments. That way, you'll have two sets of ears to better remember what you want to discuss and what was said.
Also, if it's okay with your doctor, use your phone or some other recording device to record the discussions with your doctor, so you can go over what was said later when there's less stress.
Finally, don't hesitate to ask more questions here, and review the threads in the smoldering myeloma section of the forum and the Beacon articles about smoldering myeloma.
Good luck!
Thanks for the update. I'm sorry the diagnosis came back as smoldering myeloma instead of MGUS. Just keep in mind, however, that there are people with smoldering myeloma who never progress to having symptomatic multiple myeloma. I think Multibilly, for example, has been smoldering for several years now, and his lab results seem to be quite stable, based on what he has reported in the fenofibrate thread he mentioned earlier.
SCCA has a lot of experience with multiple myeloma, so you will be in good hands there. They probably will have several trials that you may be able to participate in, including trials testing whether or not it is a good idea to actively treat smoldering multiple myeloma. Fortunately, you probably won't have to make any decisions right away on that subject.
One thing you should consider doing now is organizing your medical records so that you can better keep track of your lab and imaging results. Again, check out Multibilly's postings in the fenofibrate thread to see the lab results he tracks. Personally, I think it's a good idea to track your immunoglobulin levels (IgG, IgA, and IgM), M-spike, free light chain results, hemoglobin, creatinine, and calcium. If you're handy with Excel, enter these results into a spreadsheet and plot the results so you can pick up on trends (let's hope all the lines stay flat!).
When you have appointments with your specialist, try to write down in advance questions and topics you want to discuss, and consider having someone go with you to the appointments. That way, you'll have two sets of ears to better remember what you want to discuss and what was said.
Also, if it's okay with your doctor, use your phone or some other recording device to record the discussions with your doctor, so you can go over what was said later when there's less stress.
Finally, don't hesitate to ask more questions here, and review the threads in the smoldering myeloma section of the forum and the Beacon articles about smoldering myeloma.
Good luck!
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